Living with a rare disease, such as spinal muscular atrophy (SMA), can at times cloud the perception of being thankful. But with the holidays upon us, I’m inspired to take a moment to reflect on all that I’m thankful for because it’s easy to get wrapped up in the chaos of life and the struggles we face daily. We often forget all that we do have.
The vulnerability of our minds is very delicate in the way that it’s easier to perceive the things we don’t have rather than what we do have. We use the strategy of comparing our lives to others to try to justify what we think we deserve. Not that it’s a bad thing to desire good things. However, in my situation, I’ve learned to value and appreciate the things I do have at the moment, and throughout different stages of my life, because with the nature of SMA, it’s uncertain when the good things might evaporate.
Nonetheless, I feel it’s appropriate to give thanks to everyone who’ve influenced me to become the strong and courageous disabled woman I am today. First, I have to give thanks to God for giving me a source of hope to hold onto.
Read about HCP resources for SMA
Right under God, are my beautiful parents. Without their undivided attention, sacrifice, and research to sustain my life, I wouldn’t be here today. They taught me how to persevere through the darkest moments, and never lose faith. They’ve surrounded me with abundant love and acceptance, which I’ll be forever grateful for.
And my brother, other family members, and friends have also helped me to survive. Their unconditional love for me has been overwhelming. I’ve been blessed to have these people in my environment who have made it their priority to put a smile on my face during my most difficult and happiest moments. They’ve taken their time to figure out solutions to include me in activities that didn’t look so feasible.
I’ve learned to embrace who I am because of them. I’ve pulled strength from their uplifting words of support, believing I can defeat disability.
In addition, I’m thankful for medical personnel. The doctors of those who’ve dedicated their time to understanding SMA to care for those of us suffering from it. It doesn’t go unnoticed or unappreciated. The time they offer to hear our concerns or make themselves available to us even on their days off. Those gestures of empathy make a whole world of difference by easing our anxiety.
I must not forget companies such as Haymarket, for providing an opportunity to those of us with rare diseases to share our stories. The platform has provided our voices to be heard in an isolated, small, and muted world where it can feel rare diseases fall under. It has opened up a world of possibilities and created awareness for those left in the dark. It has also opened up compensation for those who find it difficult to find employment. By doing so, it supplies a void of self-worth that was lacking otherwise.
It isn’t an impossible task to find things to be grateful for despite our circumstances. Exercising the choice to find gratitude in all things can be more healing to ourselves than we know. Meanwhile, choosing to take the time to meditate on the things that have kept our hearts ticking and our lungs expanding can be enough to give thanks.